The Role of the Patient in Medicine---A personal perspective

James J. MezhirAffiliation: University at Buffalo School of Medicine and University at Buffalo School of Medicine and Biomedical Science Last Modified: November 1, 2001

Copyright

At age 15, I was on the Grand Island High School track team and an avid athlete. As my second season progressed, I was periodically awakened in the night by a crushing pain in my chest, which I disregarded, attributing it to weight lifting. Over time, however, I also began having a hard time breathing whenever I exerted myself. I felt like something was restricting my heart from beating, and eventually I had to quit track practice and rest. After a few weeks, the pain in my chest worsened and I found myself being rushed to the Children?s Hospital of Buffalo.

By the time I arrived at Children?s, I was doubled over from the pain in my stomach and chest. After receiving a physical exam from the emergency room resident, I was immediately introduced to the concept of a nasogastric tube. The nurse pumped out of my stomach what seemed like gallons of dark red blood. I recall a sense of relief that the hospital staff had found the problem and that I would be able to return to practice soon. But that wasn?t the case.

I was admitted to the hospital, began vomiting blood every few hours, and over the course of the next two days underwent a barrage of tests. I remember very clearly the day the chief of pediatric surgery and a group of short and long-coated doctors entered my room to tell me my diagnosis.

"You have tumors in your chest and stomach, Jimmy," I was told.

"Are they malignant or benign?" I remember asking.

"I am afraid they are malignant, and we have to go in and take them out."

Curious to know what any human being in my situation would want to know, I asked, "Where did they come from?"

The surgeon?s response was one I will never forget: "I am the best at what I do. I have written books and trained at the Mayo Clinic. All I can tell you is that you have had a run of bad luck, Jimmy."

And my luck didn?t necessarily improve.

After starting my second year of medical school this fall, I sent for my medical records. When I sat down to read all about the 17 hours of surgery I underwent and the treatment that followed, I felt a mixture of emotions. One moment, it was almost as if I were outside looking in?reading the chart of a hospital patient that my preceptor wanted me to see; yet, the next moment, it was as if I were viewing things from the inside looking out?understanding, perhaps for the first time, what the words "the patient" really mean.

I elect to provide here a few details about my treatment based on what I learned from my medical records. In reference to a biopsy of a 10 by 20 cm mass in my chest, I found the following description: "Pathology came back as a malignant process. Exact tissue type unknown. The patient was then taken to the operating room where he underwent Whipple procedure for his pancreatic mass and a repeat right thoracotomy for excision of his mediastinal mass. Of significance is the fact that there was question of injury to the phrenic nerves which did compromise his postoperative course."

At first when I read this, I had difficulty comprehending that these masses had been mine. I wasn?t sure who they belonged to, but they certainly weren?t mine. However, I did comprehend the reference to my postoperative course being "compromised" since I do remember spending the next two weeks intubated. This was necessary because I couldn?t breathe on my own due to the fact that my mediastinal mass had attached to my phrenic nerves. (I have since learned that the phrenic nerves innervate the diaphragm. If injured, they tend to leave "the patient" with an elevated diaphragm, which I have to this day.)

After about a month or so of recovery, I had to begin the real battle: chemotherapy. One day prior to beginning this phase of my treatment, I was finally given my diagnosis of non-Hodgkin?s lymphoma after an ensemble of pathologists finally figured out what my cancer was. It was a huge shock that day to also learn that I would have to wear a Hickman catheter for a year in order to undergo 12 months of chemotherapy. Being that it was the middle of June and my parents had just put in a pool, having a tube coming out of my chest was not my idea of appropriate summer attire.

I thought the surgery was bad, but it pales in comparison to what chemotherapy feels like. I remember my first treatment well. My oncologists, who are all dear to me, entered the room with a tray of enormous syringes filled with colorful medications. They did their best to list the possible side effects of the medications to my family and me: "Well, this medication has been known to cause stomatitis, cardiotoxicity, seizures, leukopenia, alopecia, nausea/vomiting. . ." Hearing this, I began to wonder what the hell I was thinking when I signed the consent form!

Many people have asked me what chemotherapy feels like. Depending on who?s asking?a patient about to begin treatment, or a curious classmate?my answer varies. Basically, the feeling you have when you?re undergoing chemotherapy can be conveyed by asking a person to imagine how he feels when he has a bad case of the flu. Then, ask him to magnify that feeling by five while simultaneously coming to the realization that it?s not going to subside for 12 months. Finally, add to this the fact that there are no guarantees the drugs will work (about a 60 percent chance), and if they don?t, you may have to start another regimen all over again after that.

Having the opportunity to be a medical student after being a cancer patient is one of the most incredible life experiences imaginable. Among other things, it seems to finally lend meaning to what happened to me as a teenager. It also helps me realize that there?s a big difference between reading in a journal about survival rates for a disease and having to face the statistic yourself. Although I had to wait until my second year of medical school, I have finally begun to see my cancer experience through the eyes of medicine. I understand the meaning of terms like "elevated LFTs", "invading mediastinal mass" and "jaundice" as a medical professional, but also as a patient.

Now, as I begin to work with patients as a medical student, I find that I am using what I learned as a patient. Yet I am also aware of and have respect for the fact that every patient?s experience is unique in many ways. Therefore, one thing I have worked to do is silence the thought "I know" that goes off in my mind when a patient remarks about postoperative pain, persistent nausea, or what it is like being intubated. While there is always the sense that I truly do understand more of what they are talking about, I also know it?s important for me to learn how to listen because being a good listener, I feel, is one of the best skills a doctor can have.

Thank you for allowing me to share with you this medical student?s perspective on the role of the patient in medicine.

James J. Mezhir is a second-year student at the University at Buffalo School of Medicine and Biomedical Sciences.